The disease no one knows, or cares about

When I call to wish my father on his birthday, I usually say: “Happy birthday, Acha” (acha or achan means ‘father’ in Malayalam).

And always, my father replies: “Thank you, same to you”.

My father is nearly 84. He was once a lawyer. Now, birthdays don’t matter to him. Nor do anniversaries, festivals, or any occasion, really. Today, he is a shell of the person he once was, physically and mentally. My father, you see, has dementia.

Dementia (‘de’ meaning “without” and ‘mentia’ meaning “mind”) is actually a misleading term. It does not mean the sufferer is insane or demented. Rather, it is the term for a group of signs and symptoms associated with a progressive loss of brain function — the sufferer’s judgement, memory, behaviour, language and daily living skills (washing, cleaning oneself, brushing teeth etc.,) slowly deteriorate.

Causes

Dementia is a curious disease, people above 65 are more at risk. But while it is age-related, it is not part of normal ageing. And it can happen to people in their 30s, 40s and 50s, in rare cases. Dementia is said to have various causes — Alzheimer’s Disease, Parkinsons, a stroke, a brain injury (caused by a head trauma, for instance), so on and so forth.

Alzheimer’s Disease is the most common cause of dementia, but not the only one. Also, doctors say an unhealthy lifestyle, no exercise, excessive alcohol consumption, not actively using one’s brain cells (that is, by doing puzzles/crosswords, or reading/learning new subjects/languages), no social contact (living an isolated life, no contact with loved ones, etc.) are also risk factors. Click here to know more. (Dementia Care Notes is probably the only comprehensive guide/resource base available in India. Bengaluru-resident Swapna Kishore who has created the site, used to be a caregiver herself. Now she runs it to help others.)

While awareness of dementia is key, support systems are equally vital. In the US, UK and Europe, there are specialised carehomes for people with dementia. In fact, in the Netherlands, there is a village called Hogewey which is an experimental facility or carehome. There, 152 residents (all people with dementia) live in groups of six in a small community that is closed off to the outside world.

“Residents are allowed to freely roam the streets, sit in the sun, stroll in the rain or enter each others’ homes–the doors are always unlocked. Hogewey offers freedom in a protected environment. Those who get lost are brought home by carers….” says a report in Spiegel, a German weekly news magazine. Read more here.

Care at home, versus carehome

In India, no such facilities exist though there are a few centres that cater to people with dementia. The Nightingales Medical Trust runs one such in Bengaluru — the Nightingales Centre for Ageing and Alzheimer’s in Kasturinagar.

But such places are few. Most people with dementia are cared for at home, not in carehomes. And the carers or caregivers are usually other family members. In our case, my 72-year-old mother cares for my father. They live in Kozhikode, Kerala, where thankfully, a strong support system exists. Also, being in a small town such as Kozhikode makes things easier for my mother. When she goes to teach Spoken English (she is a retired English professor), she contacts an agency and a guard comes home to watch over my father, for the time she is away. Apart from that, a woman comes in to help with the housework, every day. And a carer comes home thrice a week to bathe, shave and clean my father.

Does your loved one have dementia?

Why am I talking about something that is essentially a private family matter? Something that still carries a stigma in our society. Because dementia affects everyone. When a loved one has dementia, he or she will require care throughout their lifetime. And that is a huge challenge, mentally, physically, emotionally and financially. Because my mother looks after my father with courage and patience, my older sister and I are able to focus on our families and careers. What makes us feel less guilty about this fact is the undeniable truth that my father is happiest in his own home. Because that is a familiar environment. There he lives a routine that soothes him. He hates being in Bengaluru with me or in Dubai with my sister.

In India, there are many people like my father. According to the Alzheimer’s and Related Disorders Society of India (ARDSI), a voluntary body, in 2010, there were an estimated 3.7 million Indians with dementia. But the number is merely an ‘estimate’. Given our enormous and rapidly ageing population, there are probably many more people living with dementia, across the country today. But do their families know? Are they being treated and cared for?

How did we find out about my father’s dementia? We knew something was wrong — he was spending a lot of money, every month. We realised he could not distinguish between, say, a Rs 100 note and a Rs 500 note. A visit to a neurologist gave us the diagnosis. That was 10 years ago.

So if you have a loved one at home who is acting strangely, irrationally, it could be a sign. If he or she is getting violent, forgetting faces, forgetting his or her own name, unable to recognise you, becoming suspicious, unable to carry out simple functions, etc, be alert. Usually, the affected person will deny that anything is wrong, so getting him or her to go to a doctor will be a challenge.

But please perservere. Do not dismiss these worrying signs and symptoms as ‘age-related’ problems. Because dementia can affect anyone’s family. Even yours.

Next week: The difficulties in keeping track of a person with dementia.